So I’m halfway through the “Ten Things Every Child With Autism Wishes You Knew.” And I thought I would share a beautiful quote with you…
Thanks for being part of my tree.
This series of posts on “Ten Things” is based on the article “Ten Things Every Child with Autism Wishes You Knew.”
Point 5: Please be patient with my limited vocabulary.
Sometimes, talking to Alyssa can be hard. Thankfully, it’s gotten easier in recent years. In fact, she’s really blossomed. Just the other night, she told me…
“Brittany! Eustace [a friend from school] took my pictures for my senior graduating class because I am a SENIOR!”
Just getting past 3-4 word sentences is a huge milestone only accomplished in the last couple years. Add that to the fact that she not only learned new words (senior and graduating) but also used them properly in a sentence, I was amazed and SO proud of my sister. 🙂 But those of you with special siblings know that sentences like that come only after years of hard fought battles… and for some, may never come at all.
Which is why this part also made so much sense to me…
“I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to.”
Maybe this is why Alyssa can quote whole movies, word for word. It’s hilarious (and sometimes slightly annoying) to watch TV with her. 🙂
Can anyone else relate? What are your special siblings (or other relation) language limitations?
This series of posts on “Ten Things” is based on the article “Ten Things Every Child with Autism Wishes You Knew.”
Point 4: I am a concrete thinker. This means I interpret language very literally.
Any of you who have been around special needs people very long at all know how true this is. I remember some of my conversations with Alyssa…
“I’m going to die!” (Said for dramatic effect).
“Die? You are not going to die, Brittany.”
“Dora exploded.” (As opposed to ‘Dora the Explorer’).
“Brittany, are you in San Antonio?”
“Well, that’s where I live, but right now, I’m in Kansas.”
*long pause*
“No, you live in San Antonio!”
“Yes… but today, I’m visiting Kansas!”
*another long pause*
“San Antonio?”
And there are many more… 🙂
This could also explain why certain activities must always follow a similar pattern. If you go the library, you cannot just drop off books… you must check something out! If you go to the grocery store, you have to buy gum. If you drive past the ski resort, you must be going to the ski resort.
It has helped me to understand that why being literal in speech and action is so important for those with special needs.
Hm. I had written a blog post, but apparently didn’t post it. Oh well… here it is now. 🙂
I don’t think I would be exaggerating if I said the article I mentioned in my last post changed my life. Or, at least, it changed the way I interact with my sister and understand others with autism.
So what is the first thing every child with autism wishes you knew?
“I am first and foremost a child — a child with autism. I am not primarily ‘autistic.’ ”
I remember my mom telling the story of sitting in an IEP meeting with Alyssa. As the meeting progressed and my parents and the teachers discussed Alyssa’s disabilities and challenges, Alyssa became noticeably upset. Her head drooped, she focused more on the toy she was playing with, and attempts to elicit a response from her only resulted in outbursts of anger.
On another note, Alyssa is always drawing pictures for people. Recently, one of the ladies at the bank took Alyssa back to her office to show where she displayed Alyssa’s artwork. I wasn’t there, but apparently Alyssa was beaming with joy.
Even with her unique challenges, Alyssa recognizes attitudes towards her and her disability. Yes, she has autistic tendencies. Yes, she has challenges. Yes, she is special. But the most important thing to understand is that she is a person… above and beyond anything a mere ‘label’ could define. In the first story, she was labeled. In the second, she was honored. Both times, she was well aware of the attitudes towards her.
No matter the person’s age (whether a child or an adult), no matter the severity of their ‘disability,’ each and every person is an individual who thinks and feels and learns and grows and loves and bears God’s image in a way unique to themselves. No one else can do all the amazing that person does. No one else can encompass the thoughts and emotions of that individual. No one else can be who that person is. And because they are themselves, not anyone else, they leave a special mark on this world the way no one else can.
After posting about National Autistic Awareness Day, I started thinking. I’m not sure if Alyssa’s autism is an official diagnosis or more of an observation of certain tendencies over time. Either way, I’ve always known somewhere in the background that she has autistic tendencies.
Some of those tendencies are hilarious. Most of them seem random. All of them are uniquely her. Until you start to realize they are actually uniquely autistic.
For example…
Alyssa is obsessed with string, usually coupled with a fascination for scissors. The result is thousands of tiny pieces of string strewn around the house. She is also addicted to movies, watching them for hours and hours and hours and… yeah.
Autistic individuals “may become unusually fixated an object for hours.”*
Alyssa says things completely out of context. Such as “Ohh, you look so UGLY today!”
Autism means a person may “not understand the emotions of others and may react inappropriately to certain situations.”*
Alyssa adores airplanes, but can’t stand the loud noises they make.
Autistic people often have hyper-sensitive senses, making them particularly vulnerable to loud sounds, bright lights, etc.
Alyssa tends to have tantrums in grocery stores. And libraries. And gas stations. And…
Autistic symptoms often include “frequent tantrums with no obvious trigger.”*
Alyssa needs routine. Change is bad.
Autism means individuals “need strict routine and get irrationally upset about routine changes.”*
I thought these things were just uniquely Alyssa and didn’t know why these things happened or see any sort of connection between them.
That is, until I read “Ten Things Every Child With Autism Wishes You Knew.”
This article quite literally changed my life. Or, at least, it changed the way I interacted with Alyssa and viewed others who had autism. I highly, highly, highly recommend it for anyone who knows anyone with autism. (Which is probably just about every person who stumbles across this blog).
Stay tuned, because I’ll probably be talking more about each of those “Ten Things” in the near future. 🙂
*Quotes in this blog post taken from Autism.LovetoKnow.com
All my memories of riding a school bus come before fifth grade, since I was schooled at home after that particular year. But it’s amazing how many memories there are in those first few years. One very vivid image in my mind is riding the bus with Alyssa.
Of course, those of you who have been on school buses know the younger kids sit up front and it tends to progress backwards according to age. This means that kindergartners sit in front and junior high/high schoolers are in the back. Well, Alyssa never paid any attention to such unspoken social norms, so almost every day after school, we would climb into the bus and she would march right to the back, where she would find some junior high or high school boy and promptly climb into his lap.
What I remember most about this daily pattern is that the boys at the back of the bus were not very nice. In fact, you might say they were bullies. None of MY friends (that is, 2nd/3rd graders and younger) liked being around those boys. Except for Alyssa.
Since she was always at the back of the bus, I would sometimes find myself compelled to journey to the far reaches of the bus to see if she was okay. I remember making one nerve-wracking trip to find those boys trying to feed my sister empty candy wrappers. For a moment, nerves were a thing of the past as I furiously lectured them and marched back to the front of the bus with Alyssa in tow.
But what I now remember is the fact that Alyssa’s persistent, unchanging, unconditional love for those boys never changed. Nothing they did could faze her. She didn’t care if they fed her candy wrappers. Every day, she walked back there, climbed into their laps, and just hugged and kissed them all the way home.
And over time, something profound happened.
At the end of the year, those bullies weren’t bullies anymore.
That’s another one of the many beautiful things about special siblings. They teach us the meaning of unconditional love in the only way that we could truly grasp it’s full meaning.
By demonstrating unconditional love to every person they meet, every day of their lives.
You may have seen or heard the saying… “Sisters make the best friends.” It seems to be generally accepted that there is nothing better than having a built-in best friend; someone who will lend a listening ear and fill yours with crazy stories; someone you can with stay up late with or who shares your random adventures; someone who knows you inside and out—better than you know yourself.
Sometimes I wish I knew exactly what that was like.
My sister is amazing and hilarious and crazy and weird and random and fun. She is awesome and she IS a friend. But when your sister is special, it’s not quite the same.
Sometimes I just wish for normal. To be able to bake cookies together. Travel the world (or at least a couple states) with her. Go see a fun movie together. Have late night talks. Go hang out with friends.
Maybe you can relate.
But my life’s not normal. And you know what? The more I think about it, the more it doesn’t matter. We can still bake cookies if we wanted too. Sure, it’s more like managing a tornado than anything else, but we laugh and I learn patience. I might not have chosen to see “Piglet’s Big Movie” in the theaters, but hey! It’s still sister time. And late night talks do happen. They just might center on every single thing she did that day or the movie she’s going to get at the library instead of boys and fashion. And one of these days, we are going to take a trip together (something not medical related). We’ll have a blast and she’ll teach me to wonder at the small things of life.
Do I sometimes wish for normal? Absolutely. But if I had it, I don’t think I’d appreciate it nearly as much as the beautiful, crazy, abnormal life that I have now.
And now that I think about… sometimes we even DO talk about boys. 🙂
For us, the beginning started on July 5th, 1991, when an amazing, beautiful, loving special needs child made her way to this earth. I was just under 2 years old, so I don’t remember what life was like without my special sibling. It must have been incredibly dull. 🙂
I’ve grown up hearing the story of when my parents first knew something was wrong and all that followed. She was just 17 months old.
But over the years, details have come together, God has sent people to interpret those details, and as a result, the story has changed. So I’m no longer entirely certain of the story. Now that I think of it, probably no one really knows except God. And I think… He didn’t need us to understand all the details when He sent her to us. Instead, He just saw a family who could trust Him for the love and strength they would need. And a family who desperately needed the tremendous, unconditional love of a special child to show them God in the hard times. (And to give them some hard times!)
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In the beginning of this blog, there will probably just be a lot of getting things out there. Lots of posts to see if anyone else is out there and can relate. Once I get some things off my chest and my mind, I’ll hopefully be able to start more on the educational goal of this blog. For now, this is a trip down memory lane. And at the end of the trip, we’ll be able to look back and see how the faithfulness of God paved the way.
For 20 years, I lived with my special sibling. Most of the time, we shared a room. Or a bed. (Whether I liked it or not). 😉 Now I live and work in Texas while she lives in Colorado. And I miss her. Recently, I spent hours telling friends about life with Alyssa. Then I thought, “Why not tell others?” Then, “Why not connect with others?”
Special siblings live in a special world. We know things that no one else does. We hurt like no one else. We laugh hysterically like no one else. We know crazy medical terms and experience teenage tantrums. We know the ups and downs, the best and the worst. And in spite of it all, we wouldn’t trade it for the world. (Most of the time). But after all, we’re special… because we have those special people in our lives.
So you (and me) are the reasons I write.
I write to remember. I love my special sister and now I’m no longer with her. I want to remember the good, the bad, the downright terrible, and the absolutely hilarious.
I write to connect. I figure there must be others out there who relate on the same level. Why not talk? It might save hours of dumping on unsuspecting friends (though I love you for letting me!)
I write to encourage. I don’t want to end up just sharing similar experiences. Let’s be encouraging! Let’s be real, but focus on the good. Let’s hurt, but heal. Let’s tell the world about what it means to be a special sibling.
Finally, I write to educate. To educate myself by continuing to learn about special needs individuals and the unique world that is their life, their family, their community. To educate other special siblings. Let’s learn together how to thrive-both for us and our special needs sibling. To educate parents about what it means for their children to have a special sibling. And to educate others. I don’t know if anyone outside the special needs community really knows what it means to have a special sibling. I want you to know how you can support special siblings and their families through the trials and the blessings.
So that’s why I write. I hope you’re interested. I know I am. I want to get my thoughts out and if they never go any further, that’s ok. But I hope they do. I hope I can connect, encourage, and educate others to love what we are. Special siblings.
After all, this is our life.
Let’s embrace it.
Growing Up Special 